Desperate!

Today we have neurology.  I may have to cancel because Jett is home sick and it seems the world is afraid of getting the Swine Flu.  So I have not had luck getting help.  He would stay in his room!  Please anyone?  I have to leave at 1 for Santana’s 2 pm appt.  It is important so we can start going down on Seizure meds!!!!!  PLEASE!  You can call or text me… or leave a comment or email me with your number.

Soapbox… Sorry so random…

I am  10 days from being in Los Angeles.  I am SOOOOO Excited.  But at the same time I have some kind of anxiety.  It is hard leaving my other 2 boys.  It will be 2 weeks before I see them again which is what it was when we went to Florida in January.  That gets tough.  But my mom and I entertained each other quite well.  =D

Today, Jett had a game.  I missed it.   Needless to say, if I get to see another game this season as a Hurricane, we would have to leave next Saturday AFTER.  Luckily it is a pretty early game.  But Let me tell ya.  It is just too bad I didn’t get to enjoy it and really be involved in it.  Hopefully next year I can see at least 98% of games.  

The main reason I wanted to write tonight to to ask for some prayer!  Tomorrow is Neurology!!!!  I am sure he is  going to be looking for change knowing we went to do stem cells.  EEEEEEEEK!  So Please pray that my little stink that LOVES to trick doctors is alert and making good eye contact like he has been.  PLEASE!  I really want his Neurologist to think …. Hmmmmmm…. This crazy mom is on to something!  Also I have to tell him I took him down 25 mg of one of his seizure meds at night.  He may not be happy about that.  But It cut a pill out of our routine and he didn’t seem to mind.  No seizures.  HA HA!  So pray he doesn’t say… well, that is because we may have found the right dose of seizure meds for him.  NOPE… not buying it.  My God is amazing… Maybe THAT is why.  UH… Can you handle that!  

Ok, I guess I am a bit wound up.  I haven’t slept much at night lately and I am always awake 1-2 hours before I need to be.  

Oh, I guess I do have more to report!  I need to post the picture later cause I have the phone on the charger.  Santana’s Speech therapist from school was reading him Walter the Baker and she made a baker hat to put on him while she read it.  Well, it was a bit too big and kept sliding down his forehead.  4 times it did it and all 4 times Santana looked up as soon as it got in his line of vision.  One time it dropped over his eyes and he yelled out.  It was so amazing!  He continues to show progress of his head being held up and the turning towards sound.  YAY!  Oh, and Vision was using the light board on him and we had a texture ball on it and he was moving it around with the help of his therapist and Santana took over and was holding the top and rolling it back and forth on his own until he lost control.  AMAZING!  Who is amazing!? SANTANA!  WHO?!  GOD IS!  Oh yeah.  

Somedays it is hard to see through the fog. It is hard to BELIEVE that I am doing all this work with the possibility that God could be using this to heal him.  This is why I tattooed BELIEVE with angel wings on my arm.. (Deep breath in..)  Yeah yeah… I am branded.  God loves Tattoos too!  Anyway.  Every time I look in the mirror, I am reminded that I need to believe and God has it under control. Oh, as I was saying… Then the storm clouds lift a bit and I see rays of light shining down. Through my dark times, my dark walk through this journey that is bone chilling at times and stings, I know I know in those darkest times of the storm, behind all those clouds is the light.  I just have to wait it out.  And LET ME TELL YOU… waiting patiently, or waiting at all, is not one of my virtues.  But through it all, I need to trust.  Trust that there is purpose in all this.  And TRUST ME… I don’t always see it or feel it.  I get angry.  And… I think that is ok.  I think I just can’t stay there.  But instead, reach my hand up to daddy (heavenly father) and have him pull me back up and let him carry me.  Right now… I am at that point.  But that can change tomorrow as we all know.  So I thank EVERYONE in my life who lifts me, not just me, my family up and encourages us to not give up.  You are our wings to keep on flying through this.

I am not sure where that all came from.  I guess I shouldn’t drink Pepsi Max so late at night.  I gotta  try to get some sleep.  But really, all that is meant to be said is Thank you  to everyone and may you all be richly blessed as you have us!  Good night (good morning to most as I am sure no one is reading this tonight (Weds).

BLESSED.

A post that was going to be all complaining can’t be so anymore. I would have to say we were very blessed to day. I am going to start with how my day went and end with the exciting news!

I was a little frustrated today. Appointments were not going as planned. I wasn’t to happy with this mornings trip to an appointment. But that is not important. Luckily my dad came all the way down from Glendale to help with the boys. Some others offered help. But I needed my dad to come because I really wanted to go to Jett’s game! I have seen 2! There are 3 more before leaving for L.A. 1 of those tonight. So my dad come down to be with the boys while I took Santana to Orthopedics. We left the house at 2:45ish… running a bit late. We got there 2 minutes late. The line to check in was ick. They had us go straight to registration for x-rays. We did that… about 10-15 minutes. We went back to the cast room. ASSUMING the casts would come off first. Waited about 10 minutes. Couldn’t find our file. Took us to x-ray. Waited some more. Went back to cast room. WAITED FOREVER! Looked at x-rays with N.P. that can drive me crazy. I pray for her when I have to face her. *for her sake =)* Then WAITED. Casts came off… looked GREAT! WAITED for doctor. Looked at them. Did a cast for a mold for his AFO’s which was a guesstimate of what his left foot COULD be… but that way I have AFOs for Napa Center in Los Angeles. Waited some more to get re-casted. Right foot is in neutral! WOOT WOOT! If we had 1 extra week before Napa, Left would be in neutral too. But we don’t. I pray the work outs can stretch him out some more. So we finally got re-casted. No one could help her hold since most everyone was gone… it was after 5. So she had my nurse step in. Sad. We drove home in YUCKY downtown traffic… not as bad as it could be. Got home at 6:30. I missed Jett’s game. I am broken hearted. How stinky is that!? So I have a chance for 2 more games before I leave for 3 weeks. =( I made custom shirts with his name and number on it too. Never got to wear it.

So that was fun and stressful and depressing for you all. Now for some better news! I don’t have permission from the first person who blessed me today but I was blessed in a big way. The spiritual part of it was amazing. But I don’t want to rob anyone of getting blessed themselves so I won’t give it away without permission. THANK YOU! You know who you are.

Then I get a phone call from James coming home from the game. “Jett did AWESOME! He played 2nd base, got 3 people out! He hit good.” you know…everything to make me sad that this new life I have kept me from seeing it. THEN he goes to the raffle. The Hurricanes raised Santana $845 bucks!!!!!!!!!!! How AMAZING is that!? What a BLESSING IS THAT!!!!!!???? I need to add another Thank you! James told me tonight that our other neighbor Jennifer and Barbie both worked on putting the basket together! THANKS GUYS! The appearance was BEAUTIFUL! Thank you too the Hurricanes! Thank you Coach Nicole! Thank you Thank you Thank you! you have blessed us in such a way I can’t describe! This money will be put towards our next set of stem cells.

Which brings me to my next point! Are you getting excited? Are you Ready for This? It knocked me over in excitement. Are you ready? Ok… So I am really excited. But I need to point out first. The little thing for us as parents with Special needs is different than the average parent. This may not sound like a big deal to anyone. BUT you have to remember. We were told he was basically brain dead and would be a vegetable (I HATE THAT PHRASE… It was their words) for LIFE. He was to do NOTHING. May Never open his eyes. May be blind/deaf. Ok… Get it… ready?

He was laying on the floor I sat on the couch about a foot from the top of his head. I was above him. I was talking to his nurse. AND!!!!!! Are you sure you are ready for this? I am not sure you all can appreciate it the way I do…. OK OK… Here goes…

HE LOOKED HIS EYES UP TOWARDS ME AND TURNED HIS HEAD TO THE LEFT AND UP AND STARED RIGHT AT ME!!!!!!! The way his head moved… I thought he was just gonna roll over and get up and say JUST KIDDING! He looked so CLEAR! SO VIBRANT! It was amazing. GLORY TO GOD! WOOT WOOT!!!!!

I am sorry. I hope it is exciting for you all as it was for me. This is like the 4th time he has turned his head with his eyes in the last week. He is GAINING control! You know why? GOD IS IN CONTROL! Those cells are being implanted right where they need to go! Next time I would like a smile when he looks at me! =D

Speaking of rolling over and just getting up. His knees keep getting bruised and no one can explain it? Think he is up crawling after his angels in the night? That is what it looks like!!!!!!!!!!

BLESS YOU ALL! Thanks for checking in! Thanks for all your help! Do not forget! GET YOUR ORDERS IN for the Jewelry fundraiser! I close books this Saturday. It will be a perfect mother’s day gift! For your moms and Me as a mom! Nothing is a better gift then the ability of giving my son a better quality of life! THANKS GUYS!!!!!

Thank You Hurricanes and Chandler National Little League!

I need to take the time to thank Jett’s Little League coach Nicole Bentley!  She proposed to the Chandler National Little League that our team basket up for auction go towards Santana’s treatments and therapy.  They accepted this offer.  Nicole decided to change it to a raffle knowing they could make more money that way and the league allowed her to do that.  I stopped by this afternoon to drop off some money that some friends of ours in our small group gave for tickets.  They said it was going really good.  When I saw the AWESOME basket, I wanted to put in for the drawing!  The team parents did an awesome job with the items donated.  Thank you guys and a special thanks to Barbie who took a lot of time out of her life to work on this.  THANK YOU SO MUCH!  Also to Gia, Nicole’s friend, who doesn’t have a child on the team but volunteered her time to sit with the basket to push selling tickets.  Thanks!  

To all those who are brought to this site for the first time because of the raffle today, I want to say thank you for caring enough to stop by.  You may wonder where exactly this money is going to.  First is to the Napa Center.  It will be INTENSE 5 hours a day 5 days a week for 3 weeks Therapy.  MUCH NEEDED THERAPY.  We are hoping to gain more range of motion as he is really stiff due to neuro issues after his near drowning accident that happened Dec. 16th, 2006.  He can not do anything on his own, this includes eating.  He has a G-Tube to give him nutrients.  All Medicines and Can formula goes through the G-Tube as he can not swallow.  He is cortically  blind, which means his brain can’t figure out what the blob of color he is looking at.  That can be repaired and amazingly it slowly is!  He doesn’t have much head control but this therapy in May will really help with that.  And by your donation… it helps us get even further with him.  Help us prove those doctors wrong.  The ones who said he would not live through the night.  The ones who said he would be brain dead for life.  Oh no!  We are going to show him HOW amazing Santana is!  God is good!

Also, in the future, we want to go back for our second round of cord blood stem cells in Mexico.  We are 6 weeks out from doing our first round and already we are seeing some changes!  I really believe this is what is going to help him the most.  BESIDES… Our faith and prayer!  We know God is the true healer, but we also know he uses science and people as his hands and feet to allow healings to happen.  If you don’t believe that, then why do you go to the doctor when you are sick?  Get what I am saying?

At the bottom of this post, I am going to add an old slide show of Santana.  I need to put a new one together and I will work on that maybe in my down time in Los Angeles.  But this will give you an idea.  There are some videos under the VIDEO tab above.  Or you can go to youtube.com/iheartmyboys  .   

As for everyone else… and the newcomers!    Santana, as you read had a Great week!  Then the VERY next day I wrote that last post, Thursday, he was a CRANK!  He had this ICKY look on his face the whole time!  His furrowed eyebrows.  It was the funniest thing.  But he cried a TON!  He LOVES LOVES LOVES Music therapy.  But EVERY instrument she tried, Santana wailed out in a big old cry.  He wanted nothing to do with anything.  One thing that made me cringe was his spine.  When he was in his wheel chair, his shoulder was almost down to his waist.  That is NO good!!!!!! 

I am so worried about it.  But the AWESOME chiropractors at The VERVE WELLNESS CENTER on Higley and Baseline, think a lot of it is Neuro.  But Santana is a bit better each time we go.   But he did fine with his Physical Therapist that evening.  So who knows.  Tyree has been a cranky boy too so maybe it is in the air!  But his vision continues to improve EVERYDAY!  When he gets both eyes working together, which he has this week, he looks completely normal like he could open up and talk!  It is AMAZING!  He has been talking back alot.  Tyree was screaming in the car on the way to the Chiropractor the other day and Santana let out a big…”ohhhhhhhhhhhhh.”  I think he was telling Tyree to HUSH!  =D
 I need to go to bed so I am not dragging to church in the AM.  Thank you all for checking in.  Thank you for Believing!  Thanks for the Prayers!  

Prayer Requests:  

That they get going on building our house… we only have until the end of July in this rental.
 Also, My dad needs work.  He was laid off at the end of the year and in an economy like this, It is hard to get a job.  Pray for him #1.
Pray for Santana as he has had low grade fevers ALL week.  FRUSTRATING!  I think it is neurological though.

Yet, Another One….

It is time again! We are doing a new fundraiser to help with some funds for our California trip which is in 17 Days!!!!!! So from now until May 2nd I am pushing this one!!!

You can check the link at: www.socializr.com/event/477854955 This is the evite. Please send it to everyone you know…. The evite says:

“We are not having a formal sit down jewelry party!  But… from NOW until May 2nd, you can order anything in the catalog and ALL proceeds go to Santana and his trip to Los Angeles for Intense Physical Therapy.

Please contact me via phone or email and we can place your order.
You can get with me to view the catalog or look online at www.mysilpada.com/willa.ficarra Please call Willa or myself to place order.

All orders are $4 for shipping, flat rate!

This jewelry is hand crafted by artists in 9 countries around the world using .925 fine sterling silver and semi-precious stones. EVERYTHING is life time warranty.

Mommas day is right around the corner! Help us celebrate!!!! Give her something she deserves and at the same time give back to Santana!!!!
Spread the word! Tell everyone you know!!!!!!”
This Jewelry is BEAUTIFUL.  Willa is Santana’s speech therapist from school and every Tuesday she is wearing a different piece.  If you don’t wear jewelry you can gift it by passing the word.  Tell everyone about it.  Someone would be bound to order.  

If you are out of town.  No worries!!!!  Get online, look at the catalog and email or call me with what you are interested in.  I can take your credit card number on the order form.  If you are more comfortable with a check they must be IN OUR HANDS before May 2nd for the order to go in.  Made out to Willa Ficarra, please. 

I can’t tell you how excited I am about going to this Therapy!  As long as his footsie is ok when we get casts off on Monday, that is.  But LET ME TELL YOU!  He has been SUPER DUPER ALERT this week!  His eyes are AMAZING!  He is looking everywhere!  His vision teacher brought him a light board which is basically an overhead projector without a projector.  It lights things up.  He did good with it.  But he was WAY more interested in watching Tyree.  He was IN TUNE to that kid!  Oh!  And Tuesday, his PT from school had him on the bolster and his teacher was reading to him.  She made a sheep sound… BAAAAAA.  And he rolled his eyes, looked at me and turned his head!   PRAISE GOD!  Woo HOO!!!!  He was not amused!  THEN… Yesterday, he dropped his head down while sitting in the wheel chair and he picked it up himself.  WOO HOO.  Then for the giggles we put it down… and AGAIN… He brought it up!  GO SANTANA!  

We have just had an amazing week and NO seizures!  Woo hoo… Thank You Jesus!  As long as those keep staying away… he will do better, which reminds me… he SAT again with his therapist today!  His PT was just tapping his elbow to keep it straight and Santana was holding him self up!  GO NANAS!  

What a great day!  PLUS!  Amber came over with her beautiful baby!  I can’t thank you all for praying.  He is gorgeous and healthy as can be!  I could have held him all day long!  I think I got my baby fix now.  I am good.  =D

I gotta take Jett to practice.  Sorry I have been MIA.  Please take a look at the jewelry and tell me what you guys think!  Buy some mother’s day gifts and give back to Santana.  Can’t beat that!!!!!

Santana BREAKing Down…

You can pause music below on the bear…

When I said I need a Break…

I didn’t mean it literally.   I will get to that… you all need a run Down…

Yesterday (Tuesday) Jett woke up with a 104.2 temp.  Sound Familiar?  I kept him home from school.  My dad came over to keep an eye on him and Tyree as we had a GI appointment.  (that went well.  Upped his feeds a bit to get him growing.  Discussed that his foam may be milk) and went on our way.  Jett slept the whole time we were gone.  He was not feeling good.  He then peeked to 105 degrees late afternoon so I took him to ER.  They found nothing.  Just Possible Roseola. Which is HHV 6, where they peak high fevers and may get a rash after.  So we were at ER, 300 bucks later with really nothing until midnight.  Got home and in bed by a bit after 12:30 am.  We woke up to go to CRS for Santana’s casting.  I was praying there was no break down under there, or they would stop.  So I went, with Jett and Tyree in tote as it was an early appointment and I decided to take Jett to school late since he didn’t have a fever anymore and it would give some more time to make sure he didn’t get another fever.  So it was already Chaos.  

Tyree wanted out of his stroller so he can follow Jett everywhere and do everything he was doing.   Well, we go back to the cast room.  Had to wait a bit and Tyree was already losing patience.  We get the casts off and they looked pretty good. The right foot is in neutral.  The left one was getting a GREAT stretch… almost to neutral.  Then, just like a gear shift, it slipped and like a knife in butter glided past neutral.  He cried.  And cried.  The casting lady left.  I just knew.  So she came back and thinks she may have broke it.

So… When I said I needed a break… I didn’t really mean it!  So we had to get X-RAYS!  So with all the xrays taken.. he has had 5!!!!  He is not supposed to have ANY because of stem cells!   And in 2 weeks we need 2 more!  So, they didn’t see any fractures which I guess is good.  But they want to do 2 more x-rays in 2 weeks!!!!!    Oh man. What a bummer.  I guess kids like him have almost “invisible” bones (due to lack of nutrients) in the x-rays and are hard to see.  So, If there was a break, you would see it healing later.  But it could be muscle or ligaments. 

However… We have x-rays, crying babies, questioning kids, cups flying, toys thrown.  It was EXCITING…IF ONLY we had a camera following us!  It would be entertaining.  So we are casted again but we have stepped backwards because his left foot was casted less than before.  So we wasted a week.

Not to mention, we leave on the 9th of May for Napa Center to do intense therapy.  FUN STUFF!  Hopefully he is well enough for that!  Now that I know how easily Santana could be hurt, I am a bit worried about  the 4 hours a day therapy.  He is more fragile than I thought.  

Oh the drama!  So… I am running on little sleep and lots of stress.  Not a great mix if you ask me!

Lots to Catch Up On!

I have been so busy. I keep forgetting to update.  I survived this week!  So, Wednesday was Orthopedics!  First, A big thank you to my former nurse Kaylynn for coming in and helping me with this one on her day off.  Also THANK YOU Shawna, from East Valley Sol.  She came and got Tyree.  That helped a TON!  Santana  now has 2 blue casts on his legs.  The last time he did serial casting was in December ‘07 and it was successful to get his feet in neutral position in 3 weeks.  I only have 4… now 3 and a half before going for 3 weeks to the Napa Center.  So I pray it goes fast this time too.  Basically, they push his feet who are dropped and pointed down, as far as he can and cast them.  We go back every week to recast.  SO!  If anyone is up for helping with Tyree again!  Every Weds. for a few weeks!  Plus I have a Tuesday Appointment for Santana’s GI doc.    Santana is tolerating the casts so very well!  I am proud of him!

Thursday he had an eye appointment at CRS clinic. My sister-in-law came from the other side of the valley to watch Tyree.  I attempted to take Santana by myself.  He didn’t choke!  YAY!  He did good for his mommy!  Eyes are still doing good… just a matter of retraining the brain of what it is seeing.  

Friday, Jett was out of school for Good Friday.  He was bored because I had Santana who couldn’t go outside.  But I did manage to load up all 3 kids and go to Tempe to pick up some shirts I had made to wear to Jett’s game.   Then I actually went to the grocery store with all 3.  That would have been alright.  But they were SUPER busy with Easter.  It was too tight for all of us.  But we survived.  Friday night, my sister-in-law Janet came back so James, Jett, and I could go to the Diamondback vs. Dodgers game.  My dad met us up there.  It was a lot of fun.  THANKS MIKE!  I ate so much junk I was feeling very yucky when I got home.  

Today, James and Jett took our nephew to the game.  It was Little League day.  They get to parade around the bases.  Although I like the Dodgers.  I am glad I stayed home with the babies.  I just haven’t been feeling well.  So they should get home around 10.

With all that busyness, we are surviving!  Santana has still had blood tinge in his suctioning.  Frustrating.  You can see that in the suction canister I posted.  I am sorry if anyone is grossed out.  I am also posting the rashes he got in the hospital and what not.  Sorry I have been slacking on pictures.  My new camera/phone doesn’t connect straight to a Mac… so I have to blue tooth them and it takes a while.

Santana continues to run fevers up to 100.  Stem cell guys suggest not giving antibiotic unless absolutely needed!  But I think a week of fevers… it is needed.  I pray it doesn’t attack the cells and kill them off… although… we have already had 3 X-rays.  So, we will see.  He is really foamy and yucky too.  But at least today it is clear and not pink/orange.  Poor baby!  

I also wanted to thank my WONDERFUL Counselor.  She has just helped us make strides in all of this.  We have a VERY long way to go.  But she has been great.  She went from helping Jett, to us, to even just me.  She has been such a blessing and now offers her services pro bono.  She wants to help our family out and I could not be more thankful for her.  And
a big thank you to my sister-in-law Meredith who referred us to her.  And of course a big thank you to my mom who has been telling us from the beginning that  we needed counseling.  THANKS GUYS! 

I just wanted to share this.  Friday, Good Friday, I reflected that I am not alone when it comes to watching my son suffer.  God went through this years ago.  He saw his son beaten unrecognizable.  But through Christ, we get to see God Face to Face and live eternity.  It wasn’t just that day he had to watch his son suffer.  We has humans are his sons and daughters and I know he hurts every time we hurt.  He hurts when we sin.  He knows what watching and not being able to do a thing about it is.  So there is comfort in knowing I am not alone.

With that said.  I hope EVERYONE has a blessed Easter and remember it is about the cross and the empty tomb… Not the bunny and the eggs!

A Plea…

Sorry to bug you all AGAIN.  But I am DESPERATE for help. They are going to send me a new nurse to start next Monday.  But for now, I need to get to 2 CRS appointments this week.  1 is Wednesday at 10:20 the other is Thursday at 2:00.  I really need someone to watch Tyree and someone to come with me so we can make sure he doesn’t choke.  Or someone to come with and watch Tyree in the waiting room… Lord have mercy on that soul =D …

Anyone… PLEASE!????

What?!?!?!

So… Santana usually foams this white foamy stuff out the mouth and nose.  NOW it is pink/orange.  Blood Tinge.  WHAT?!  Is all I can say.  Really?!  No answers for this?!